Risperidone

[SPACLINE]

Ive just been given a prescription for risperidone for my 4 year old son whos severly autistic.Ive been told its not licensed yet for children but it is used to help with their sleep problems & anxiety during the day.Its actually given to szchizophrenic (not sure I spelt that right)adults!I dont have to give him it but Ive got the RX if I want to.I was wondering if anyone has any experience of this drug.
Thanks,
Jacquie

Yes, I have experience of this medication with my own son and at least two other friends children who have used it. Even with the best 1:1 early intervention my son still has an underlying tendency towards aggression, SIB, moodiness although all of this got worse when he was about 7 (he's 9 in a couple of weeks). This seems common in children with ASD around this age and is often linked to pre-puberty (honestly!). Of course, not all children with ASD go through such a phase or it may be different, mine is just very active and expressive which can be great a lot of the time but awful if he's in a "bad mood". He's been taking Risperidone for just coming up to a year and it has been like magic. I believe it has made him more relaxed and happy and able to enjoy the things he likes rather than getting anxious. It has not affected his personality. We were very cautious about medication but we don't have an issue with conventional medicine unlike many people these days and many years ago we attended a conference where a very well-known adult with autusm (Temple Grandin) spoke and talked about how she had resisted medication for many years and finally decided to try it and it had completely changed her life for the better. There's quite a lot of research if you Google "Risperidone autism". There are side effects of course, weight gain being the most obvious. At the moment we are having problems with our Paediatrician thinking our son needs a higher dose as he has got bigger, but the higher dose gives him sleep problems (although this drug also can induce sleep!). My two friends who have used it have respectively

• a child who is at the severe end of the spectrum with very poor communication (including receptive) and extremely difficult behaviour
• a very h/f child with aspergers, normal IQ, full communication skills but VERY obsessive and anxious I think you need to liaise with your Paediatrician very closely, especially as your child is quite young to start on meds. Don't be surprised that its not licensed for children, many drugs aren't and that's why they must be given with careful monitoring and consultation with Paediatrician. Hope this helps.

Spacline,

I have no personal experince of resperidone.

However I may be able to give you some information on the Licencing issues (I used to work in the pharmaceutical industry).

Hardly any drugs are specificaly licenced for use in children. The reason for this is quite simple, no-one would put their kids into a clinical trial! And you cannot get informed consent in a child, and without that you can't enter them in a trial (simplification of the situation a bit, I know, but that this the general gist of things.)

It is very, very common to use things 'off licence'. For example antidepressants are used very sucessfully to treat pain, not licenced but works very well, and people have been doing it for years. Some medications for epilepsy are used to treat trigeminal neuralgia. Treatments for meonopausal women are used to treat girl babies with fused labia!. The paperwork costs of getting these extras on the licence are large and drug companies will often not bother to get the licence changed. In these situations they cannot market the drug for off licence use, but they are used every day, often with great sucess.

No-one can say to you that treatment is without risk, nothing in life is without risk, leaving your son intreated will have risks of its own (as I sure you know).

Get as much information as you can, and talk to your docs. Hope things get better soon for you and your son.

My daughter who is now 14 was put on Risperidone when she was 10. It was a miracle drug. It helped so much with her anger and sleep. Unfortunately it also caused her to gain a lot of weight. The doctor changed her to Seroquel which helped just as well without the weight gain. In fact she lost all the excess weight very quickly. My son now 9 is also on Seroquel for sleep and anger problems. He was put on it at age 7. We suspect he has Aspergers but has not been officially diagnosed. I know it's very hard to give kids these medications but I feel that it can be just as risky if not more to not medicate them if they really need it. I worry all the time about what the long term effects will be but I am comfortable with my choice. Good luck with your son.

Well, I've been surprised by the reaction of my friends who also have children with ASD. I didn't tell anyone at first, partly because we wanted to see if people noticed a difference without knowing, partly because I felt guilty and partly because I thought they would be judgmental. I gradually started telling people, especially those who were having real problems with their kids and EVERY single one said "what's it called, I need to look into it" or "I'll rememeber it for when we needed it". EVERY one of them! And two have looked into it for their children and gone ahead. Thanks for posting Div, I will ask Paed about Seroquel. I've got a document of saved info from parents about alternatives or other meds to try instead if it becomes a problem, one is called Abilify so that's another to look out for.